About foundation
Pompe foundation is a Trust started by the parents of a little girl who is fighting against this orphan disease, the Pompe foundation is here to help ease the burden of patients and parents of Pompe.
Mr. Prasanna Shirol and Mrs. Sharada Shirol Nidhi took 7 years to diagnose the deadliest rare disease Pompe for their daughter Nidhi for the first time in India after visiting several hospitals. Treatment and taking care of his daughter was their next challenge and was beyond their reach as the cost of treatment is prohibitive. They have been struggling from last 12 years to take care of their daughter. Pompe, being the deadliest and costliest disease among 40+ (LSD) to treat and maintain and the no of patients being increased in India due to increased awareness among doctors. They felt the immediate need to support the parents of Pompe children before they collapse economically and psychologically, hence the birth of Pompe foundation. (more…)
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Latest News
Date : 09-02-2022
Delhi High Court Weighs In On Dare Disease Treatment
The Delhi High Court has recently voiced their disapproval of the continued neglect for the... - Read More
Date : 10-08-2021
FDA Approves Nexviazyme® (avalglucosidase alfa-ngpt), An Important New Treatment Option For Late-Onset Pompe Disease
PARIS – August 6, 2021 – The U.S. Food and Drug Administration (FDA) has approved Nexviazyme® (avalglucosidase alfa-ngpt) for the... - Read More
Date : 03-07-2021
Rare Disease Patients Deprived Of Central Funds, Karnataka Govt Aid To Go Dry Soon
The IGICH will face a serious difficulty from August 2021, the High Court observed on... - Read More